6 year old diagnosed with RLS

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GRACE
Posts: 1
Joined: Tue Aug 24, 2004 10:11 pm

6 year old diagnosed with RLS

Post by GRACE »

My 6 year old child has been diagnosed with RLS. His doctor has recommended Mirapex. I would like to know if anyone has a child with RLS or can tell me a little bit more on what my soon is experiencing?
Grace

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

God Bless you both

Post by becat »

Hi Grace,
Wow, I just had to cry before I could answer you.
I'm Becat and I'm a lifer, 40 years now.
I can't imagen how different my life would have been if I had been diagnosis at an early age. God bless you for letting some doctor ignore your baby's symptoms.
You need to go to read through this site to see what the true effects of RLS are. I can tell you that there are common things amoung us, but unique symptoms as well. The most powerful thing you can do is Educate yourself. This is a progressive thing. Your son should get some relief from the Mirapex. It may take awhile to find the right dosage and it might need to be increased as time goes on.
Your just in the right place here. You'll find helpful, knowing, caring people here. We work as a team and most of us feel like family.
I'll alert some of our more posted members to your presents and we'll see if we can't get all your quetions addressed.
Your not alone and we're here to share and help. I do hope you'll keep us posted.

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Post by sardsy75 »

WOW! Top Marks go to your doctor for having the good sense to get to the bottom of your son's problems; and also to you for persisting in finding out what is wrong! :D

First things first, some links for you and your doctor are below. I do not recall seeing much about treatments for childhood RLS, however, I love a challenge and will be doing some major ferreting about the net to see if I can't find something for you.

Below are some links to some excellent RLS sites, including medications & treatments:

General RLS Information

http://www.wemove.org/rls.html
http://www.jmjudson.com/rls.html
http://www.rlshelp.org
http://www.sleepnet.com/disorder.htm
http://www.rls.org

RLS Treatment Information

http://www.jmjudson.com/medications.html
http://www.rlshelp.org/rlsrx.htm

Fighting RLS with everything else

http://www.rlsrebel.com

After a prod from a friend, I have checked out Jill's site (RLS Rebel) and in her FARQ (Frequently Asked RLS Questions) section is the following:

QUESTION #12: What can I do for my child who has RLS?

ANSWER: First, realize that many of us have had it since childhood, and we survived. So do NOT panic. Learn as much as you can about it, and learn how to use the Rebel Program. Give these tools to your child, teaching him/her to take control and stop it in its tracks. Help him choose appropriate tricks, like suckers (for distraction), sitting on aisle seats at movies, using music to get to sleep at night. And help him analyze what thoughts, foods, or over the counter drugs might aggravate RLS symptoms. Do NOT call it a "beast" in front of your children. Help the child see it as an obnoxious bully that can be managed and survived. Knowlege and a few good tricks, are very powerful for children.

(Source: RLS Rebel 2001 - http://members.cox.net/gunzel/faq.html )


Having read that, it might be helpful to start keeping a diary/record of what your son eats and drinks; any medications he takes & what dosages; the times when he complains about his legs; how many hours he sleeps at night. I know, this sounds tedious, but it will go a looong way in helping to get your son the right treatment; and you may start to see a pattern develop over a period of time too.


If your family doctor is open to specialist help, this link will take you to the Healthcare Provider Listing on this site: http://beta.restlesslegs.org/provider_directory/

Your family doctor may also find the RLS Foundations 2004 Medical Bulletin useful. The link is here: http://beta.restlesslegs.org/pdf/2004_m ... lletin.pdf

You might find it helpful to print out any information you think is important and put it together in a folder.

I am 28 (well, 29 next month) and I suffered from a severe case of RLS when I was a child. I can clearly remember my mum and dad taking turns to sit with me each night, rubbing/massaging my legs, trying in vain to help to settle when all I wanted to do was thrash and kick all the while crying "my legs are So Tired, I don't know what to do with them!". I would've been around your sons age when this started. Our family GP at the time did test after test, but could find nothing, then I was dragged all the way to Brisbane (600kms south & an 8 hour drive) to see specialist after specialist who all did their own tests, only to shake their heads and say "we have no idea, sorry!" :roll:

Our GP would not give up though as he could literally see what it was doing to me. I was agressive, frustrated and awfully tired. Not exactly a model child. He kept doing more tests and finally one day he decided to try a different approach: what if it was something within my lifestyle that was causing this? So, 20yrs ahead of his time, he thought OUTSIDE the box, took the plunge and suggested that I go on a TOTALLY Milk Free Diet. When I say Totally, I mean Totally, not a skeric of dairy was allowed, which meant that doing the groceries would take over 3 hours as mum would read each and every label.

I can vividly remember the day I was taken off milk too, it was Easter, and, as most kids do, was hoeing into my choclate easter bunnies! Only to have mum take them away from me saying "sorry sweetie, but we think this might be what is making you sick". Well, within 48 hours I was a new little girl! I ended up having such a severe dairy intolerance that even one literal drop of milk in something would have me in hospital within 6-8 hours :shock:

Like my childhood RLS, I eventually "grew out of" my dairy intolerance, although now I think of it more as having gone into remission. I was hit with it again last year, and once again, good ol dairy foods are a part of the problem. On the plus side I must say that the range of dairy-free products available nowadays is far greater than it was 20yrs ago :?

Talk to your family doctor about possible links to the ingredients of food/drink, he's come this far with you already, so he should be open to trialling things that might help find some relief for your son.

Take it one step at a time, one day at a time and most importantly, Stay Positive!! You have found a wonderful "family" here and we are here for each other day and night.

Take care of you (and your son!) and keep us posted on your journey.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Post by Sole »

Welcome Grace. How blessed you are to have found a Dr. who is knowlegable about RLS is children. My son is almost 17 and I just recently put two and two together and asked him about RLS symptoms. He has them ALL! He told me that he walks the floor a couple nights a week. So we are just now looking into treatment for him. It's VERY hard to find a pediatrician who diagnoses RLS. I would be very interested in knowing who your Dr. is. Perhaps he'she can recommend someone in my area. If you're willing, would you private message me with your Dr.'s name and contact info?

My son suffered from terrible "growing pains" when he was younger. He was diagnosed with ADHD at 10 years old. Looking back I can see how many of his RLS symptoms could have been misdiagnosed as ADHD. However, I do believe many of his sypmtoms are ADHD. Has your son been diagnosed with ADHD? If so, you might need to do some advocating for him, with the schools, to make sure he isn't labeled "learning disabled" just because he has RLS. It's very hard for children to articulate how they feel at such a young age so you'll need to help him put words to his feelings. Best of luck to you and please let us know how the Mirapex works for you.

One suggestion which might help you. When my son complains of leg aches, I give him Calmax which seems to help him a lot. It's a calcium/ magnesium supplement that you can find online. When his symptoms are really bad, it doesn't help much but I've noticed it does help a lot with his hyperactivity.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

I'm so Sorry Grace

Post by jan3213 »

Hi Grace, this is Jan

Grace, I must admit I saw your post the very first day, but after I read it, I just did not know HOW to respond. As parents, we all know that anything that happens to our children hurts us even more, and I cannot imagine what you are going through. I feel so for you and your precious child. I just didn't know what to say. But, there is hope! We are living in an age where more and more is being discovered about RLS. And, those of us on this discussion board are not going to let the medical community forget about us (or your child). Have you noticed recent activity regarding a questionnaire on RLS which was composed by Jumpyowl? He is requesting that as many people as possible (from this discussion board, of course, as well as RLS sufferers from other countries) fill one out, so that he can gather information to be presented to the national meeting on RLS at Long Beach, CA in November, 2004. We are fighting for ourselves, for YOUR CHILD, and for future RLS sufferers. The percentage of RLS sufferers may be small, but, as Becat said "together we make a big fist". Sometimes, I don't think people in little white coats in laboratories doing research think about the human side of diseases. They need to know!! So, keep your chin up. We are all here to listen to you. WE CARE ABOUT YOU AND YOUR SON! And any time you want to vent, cry on a shoulder, complain, anything at all, SOMEONE will listen. Take care, dear. I know you will take care of your son. But don't forget to take care of you!

Jan
No one is alone who had friends.

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